Palliative Care and Hospice Help Parents Age Well Until the End: What’s the Difference?

“Perhaps the most common misconception about palliative care is
that it is synonymous with hospice care….”
UCLA Medicine Magazine 2009
(Now Called U)

Aging as well as possible, as long as possible

Some time ago I saved the link to Comfort Measures from a 2009 UCLA (University of California at Los Angeles) Medicine Magazine, written after Mother’s death. Prior to reading it, I’d thought palliative care was the same as Hospice. It isn’t. This informative article explains that “…….it plays a prominent role in a dying patient’s life, it is also offered in conjunction with life-prolonging and potentially curative treatments for patients with cancer, heart failure and other chronic and life-threatening conditions.”

In other words, palliative care can begin long before a doctor’s diagnosis that the patient will probably die within 6 months. That’s the diagnosis needed when Hospice offers its services. (That said, calling in Hospice is not necessarily confirming a death sentence. See Hospice link below with information that not all people receiving Hospice care die within 6 months. Some improve due to Hospice’s care and go off Hospice…and can still go back on later.)

Excerpt:

IT WASN’T LONG AGO that comfort and the psychosocial needs of seriously ill patients and their families were not top priorities for medicine, but that has changed. “The relief of suffering and the cure of disease are both obligations of the medical profession,” says Bruce Ferrell, M.D., director of palliative-care services at UCLA. “People sometimes see a rigid healthcare system that can become disconnected from the mission of providing people with humane, respectful care. Our goal is to assist them so that patients don’t suffer needlessly.”

Palliative care – which aims to relieve suffering and assist seriously ill patients and their families to address issues of treatment and support that arise in life-threatening illnesses – is among the fastest growing medical subspecialties, fueled by a number of forces, not the least of which is consumer demand. The Journal of Palliative Medicine estimates that palliative- care programs have doubled since 2000, with more than half of hospitals with at least 50 beds now having such a program. That includes UCLA, which since 2007 has had a palliative-care service providing consultations 24 hours a day, seven days a week, at both its Westwood and Santa Monica campuses….

Perhaps the most common misconception about palliative care is that it is synonymous with hospice care; in fact, though it plays a prominent role in a dying patient’s life, it is also offered in conjunction with life-prolonging and potentially curative treatments for patients with cancer, heart failure and other chronic and life-threatening conditions.

“It used to be that all of our efforts at patient care were directed at curative interventions up until the point that patients were on their deathbed, and then everything turned to comforting them in the last few days of life,” says Dr. Ferrell. “Today, there is greater appreciation for the importance of symptom control and discussions with patients and their families about the natural history of their disease early in the course of the illness.”

Read Comfort Measures in its entirety at: http://magazine.uclahealth.org/body.cfm?id=6&action=detail&ref=702

Related:
https://helpparentsagewell.com/2012/03/24/aging-parents-and-hospice-to-call-not-to-call-when-to-call/

http://www.npr.org/blogs/health/2013/12/16/250194489/how-palliative-care-helps-one-iowa-family-s-experience

Aging Parents: Making Major Decisions–Think: Doctors, Life-saving/changing Surgery

How Do We Make the Best Choice?

We make many choices throughout our lives, granted some much more important than others. But how do we know we’re making a really good choice–or the best choice–when major health matters are involved?

I posted a few years ago a relative’s stage 3-4 colon cancer and efforts to get him to leave the comfort of his home town and go to Sloan-Kettering in NYC, where the country’s leading colon cancer surgeon was at the time. His heart (and wife) were urging stay home for the surgery. But a science researcher relative demanded he go to NY–regardless of disruption to his and his family’s routine and any other inconvenience.  Bottom line: Head ruled heart. His surgery at Sloan-Kettering was much lengthier–more complicated–than first imagined, but the team there was well equipped to handle it.  He lived to see his daughter married, the birth of his first grandchild–and he’s still alive today. A good choice. And his insurance took care of almost everything.

I think about the countless choices teenagers need to make during that period of their lives. As counselors we try to instill good decision-making skills so they know how to make good choices, and think twice when a strong pull towards “heart over head,” “a friend said…,” “everyone’s doing it,” I just don’t know how to decide” etc. become a reason or default reason for their choice.

Identifying then prioritizing options, along with the rationale for those options, is productive and instructive.  And when time is involved (ie. for surgery, rehabilitation, recuperation), doesn’t it make sense to get the most out of that time….meaning using the best health professional–because the “cure” involves the same amount of time–more or less– whether its results are very productive or barely productive. (Next finding out what medical insurance qualifies no doubt gets added to the  priorities/options mix.)

Choice of a surgeon after Sr. Advisor R broke her hip at age 97, was left up to her doctor. He selected one who had “good hands,” “could get in and out quickly” thereby reducing trauma and blood loss in an elderly person, which he thought extremely important. This meant “very experienced” which was a requirement for the surgeon and the physical therapists in the rehab center she was transferred to. (Result: she did great as you know from reading the broken hip posts.)

“Very experienced” and “an excellent success rate,” were the criteria when Dad underwent 5 bypasses many year ago. Bypass surgery was relatively new at the time and we learned (upon questioning) it was important that the surgeon did what amounted to a bypass a day (not counting weekends)–in other words, was doing this almost daily (at a time when only a small number of heart surgeons could make that claim).

The internet makes it possible to locate “the best.” And at leading medical centers (although probably not as warm and cozy as the hometown hospital) there may be residences provided for families while a loved one is having a procedure. (MD Anderson and Sloan-Kettering, for example, provide this.) Also check the US News Top Hospitals 2012-2013 in the Blogs and Sites I Like tab above.

How to find top hospitals? Using prostate cancer for the model, I googled:
1. “best prostate cancer hospital;” this site looked interesting: http://prostatecancerinfolink.net/2011/07/22/top-hospitals-for-cancer-and-for-urology/.
2.  I decided to follow Johns Hopkins: http://urology.jhu.edu and clicking “About Us” learned it was the #1 Cancer Center from 1991-2011
3.  I clicked this Johns Hopkins site, wanting more information: http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/prostate_cancer/prostate_multi_d_clinic.html.
4. And I remembered something about a Charlie Rose interview on prostate cancer so googled that and found this excellent, informative video of Charlie Rose interviewing a renowned Johns Hopkins surgeon: http://urology.jhu.edu/prostate/videoWalsh.php

While it takes time, feeling I had some command of what was involved by seeking “the best” was the best. I was no longer basically clueless and dependent on others because I wouldn’t even know the questions to ask. And asking the right questions can lead us to the best answers as we continue to help parents age well.

Related:
A long post (concerns various cancers), disconcerting at times, but very informative and worthwhile about “the best”– how to select them, when one definitely needs them, with statistical comparisons. http://www.thedailybeast.com/newsweek/2009/10/16/what-you-don-t-know-might-kill-you.htm

 

Aging Grandparents and A Grand Grandson

A SILLY QUESTION:
ARE GRAND CHILDREN GOOD MEDICINE?

He sat next to me on the plane today. Was late boarding. Turns out he was standby, had missed 2 earlier flights–needed to get back to the east coast after coming briefly and unexpectedly to see his very ill grandmother in Nevada.

He also needed to sit back and unwind but didn’t think he could. He’d already been at the airport for hours and it was only 10 am. After this short flight, he hoped there would be standby room on the next flight that would get him to Philadelphia, in time to take one more short flight home before that little airport shuts down for the night and precludes take off from Philly. And he has work tomorrow. Never-the-less, this visit was worth the inconvenience.

He’s college age, I think. Is working full-time at a good job. Last Wednesday afternoon an unexpected phone call with information that his grandmother had a cancer diagnosis, and the probability of a short time to live, catapulted him to action. He talked about how much he loved his grandmother; about his getting on the plane to Nevada the next morning–standby; he just had to come, he said.

I think this was his first year working at his job. Clearly he must have used up most of his personal days with this trip, but I doubt he cared. I think he would have moved heaven and earth to be at his grandmother’s side. And his devoted grandparents, “soul-mates–married over 50 years,” were now separated: his grandfather at home, his grandmother at the hospital where she would be for three weeks of chemo, already begun.

He related how she brightened up when he arrived. Upon questioning, he said he was her favorite. Obviously he adored her. He thought his presence made an important difference, adding “it might sound strange,” but he had this feeling–that she was actually getting better. He said it was hard to explain.

Before the announcement to turn off all cell phones was made, he had a text on his cell phone. He moved it over to me and said “look”–TEXT

Don’t grandmothers say–all the time–that being with grandchildren is the best!  How often do they spontaneously pull out their pictures, talk about their accomplishments, or about their new jobs or upcoming marriages? Yes, grandchildren are good medicine. From infancy on they add to our parents lives, helping them age well.

And who could ask for a better grandson!

(Text used with permission. Double-click to enlarge.)

 

Is Meddling Helpful or Unappreciated When It’s Someone Else’s Aging Parent?

A Judgment Call

Dried Miniature Arrangement

Dried Miniature Arrangement

A carefully-wapped dried miniature flower arrangement surfaces in a recently-opened box from our move. Gently unfolding the small-size bubble wrap reveals intricately designed, award-winning miniatures. While they look life size, they are–in fact– no more than 3″ in any direction. A gift from a very dear older friend before she died. (Click photos to appreciate details.)

She had a wonderful, caring family–a son and daughter who couldn’t have been more devoted or on top of things, although I didn’t know them well. I knew their mother only as an esteemed flower show judge–that is, until the last few years of her life when her cancer returned.

We sat next to each other at a flower show and learned we both had ponds. Her fish had been eaten by some wildlife. I had fish to spare which I later took to her newly-protected pond. We shared a passion for gardening and a love of miniatures and in the fun and now-treasured times that followed while she battled cancer, we became friends.

Throughout her experimental cancer treatments, with the ups and downs, she carried on–not wanting to waste a day of living, and she delighted in sharing her talent with younger people like me. When her kids went away on business trips, we exchanged telephone numbers and I tried to fill in by doing something “gardeny” with my friend. I felt like a special daughter.

The cancer progressed in spite of the drugs and she stopped driving. Living at home became more difficult so she went to her daughter and son-in-law’s. They had a room and bath at one end of their home–privacy. She made beautiful flower arrangements for their home, had company there during the day when they were at work, and was driven to her home several times a week to tend her plants, do paperwork, and get things in order for the ultimate.

But the ultimate didn’t come as one would like–how often does that happen! While living with her daughter she had a serious event that necessitated going to a fine nursing home nearby.

It was a half hour drive for me. I decided I’d go twice during the work week so her kids wouldn’t feel it a necessity to stop by if they were tired after work. One afternoon my friend, who still thought clearly, was uncharacteristically agitated. Two older garden club women were there when I arrived. They were uncomfortable–didn’t know what to say or do and my arrival gave them a chance to leave. I walked them to the door, deciding I’d stay a while longer.

This is when my friend asked if I had my cell phone, which I did. She thought she was on too much medication–was having trouble holding thoughts and getting her thoughts together. Accustomed as she was to being in control, her agitation was understandable. Can’t remember if I gave her my phone and she called her daughter or she gave me the number, I made the call and handed her the phone. In any event, she said she wanted to plea with her daughter for a change of medication asap and I became the conduit.

My counseling training kicked in. I knew I was triangled in by participating in the phone call–something professionals are taught to avoid. This was between mother and a very smart, good daughter… not a mother, daughter, and me. But stuff happens. My wanting to help my friend was injecting itself into her relationship with her daughter.

That night I phoned the daughter and apologized for interrupting her work day. She graciously said she understood, telling me she’d called her mother’s doctor.

My role was friend. My friend’s daughter’s role was health care proxy. That’s a difficult enough role without another person getting triangled into the mix. Yet it’s easy to fall into the trap. Is the key to recognize it and–unless there’s a threat to life and/or limb–get out gracefully so our meddling is overlooked and our caring is appreciated?

Check out “Newsworthy” (right sidebar). Links to current research from top universities plus some fun stuff to help parents age well.

Caregiving, Cancer, Computer and Convention Come Together Tonight

Helping Aging Friends

While I should have been writing tonight’s post early this evening in order to watch the convention tonight (I’m a convention junkie every 4 years), my brother calls my cell phone. It’s dinner time in NY. Initially I let it go, waiting for a message. No message. Instead he calls my husband’s cell. I realize it’s important.

My brother’s very good friend, age 75, has cancer. A biopsy taken today may not be back for 3-5 days, but scans show 2 highly suspicious tumors. He’s in the VA hospital.  Should he come to NYC where the experts are–to Sloan-Kettering? Can I recommend someone? While I do know someone who “lives” the medical field and does thorough research, added information before action is needed.

I’m also aware that the sister whom I’ve never met and I assume is in her 70’s, is already caregiver for 2 sisters. One, 82, is confined to a wheel chair; the other has major health issues. The caregiver sister has been the sole caregiver for several years with a little help from her 75-year-old brother. Since all the siblings live together, it’s probable that she will soon have additional caregiving responsibilities because of her brother.

I first learned of the situation on my visit to the Northwest–understood from my brother that the caregiver sister said she didn’t think she “could take any more.” In trying to get her mobility-challenged sister from the wheel chair to the car the week before, she and her brother had fallen and suffered bruises. She was exhausted. And that was before her brother’s probable cancer diagnosis. So last week I complied with my brother’s first request that I speak with the caregiver sister.. He gave me her number and I phoned–trying not to be intrusive.

Caregiving in a Vacuum

The sister was appreciative, basically clueless about support. Visiting nurse services? She’d never heard of them. Social services? Her mobility-challenged sister was receiving physical therapy each week–had been for at least a year–but she didn’t know who arranged it and knew nothing about social services. This woman has been caregiving in a vacuum.

While my knowledge about specific support services in that city is very outdated, I know hospitals have social workers. And since she was spending time at the VA hospital, I suggested she start there and also tell nurses taking care of her brother about her situation and seek suggestions for possible help. Additionally I suggested she discuss her situation with the physical therapist the next time she came.

The writing of this post is halted.

Tonight, at my brother’s request, I once again phone the caregiver sister.  She’s appreciative and begins by telling me that she never would have known about visiting nurses or social workers had it not been for my phone call last week. (She immediately took action and scheduled a social worker’s visit for tomorrow.)

We talk about hospice. Like so many, she has the misconception that one must be on death’s doorstep to use their wonderful services. She never heard of respite. Said she was going to talk to the social worker about that tomorrow.

Then I ask about using a computer to gain information or even share concerns on a blog or website (like www.caring.com) so she wouldn’t feel so alone. This seemingly smart woman is computer illiterate. Never used a computer. While it’s never too late to learn when one has a good mind, it saddens me that she’s without this valuable tool.

*                             *                            *

We do what we can to help aging parents–and  friends and our friend’s and sibling’s  friends. This caregiver sister is doing more than she stretched to the limit, while awaiting the biopsy report. So much is out of our control, yet we can take heart: sharing information and being supportive to caregivers is under our control.

Additional Resources:
http://www.agingcare.com/Articles/When-to-Call-Hospice-and-How-to-Find-One-Near-You-96209.htm

https://helpparentsagewell.com/2012/03/24/aging-parents-…l-when-to-call/ ‎  information from a former hospice nurse concerning when to hospice–as well as the fact that people under hospice care can still go to work, some actually get better with hospice care routines and some come off hospice.